Out of order: Keep talking

As I share these thoughts with you, Canada is engaged in #BellLetsTalk day, a social media-based opportunity to openly converse about issues related to mental health. In all my personal outlets, people are offering support, expressing hope and, in some cases, sharing their own challenges (past and/or present) in the hopes of shining a light on something that can only get better by actively engaging it.

Earlier today, while populating the DDNews Twitter account (@DDNewsOnline), I briefly reported on Genentech’s termination of two Phase 3 studies of a treatment for Alzheimer’s disease due to concerns the trials would not achieve their primary endpoints. Yet again, the neurodegenerative condition thwarts our attempts to ameliorate the suffering and loss.

I think of the researchers and clinicians who worked tirelessly to get the therapeutic lead this far in the process, only to face this setback, forced to regroup and see if anything can be salvaged from this massively expensive undertaking.

And I think of the patients and families who face the daunting prospect of a medical condition that has been described as a living death. So much hope arising from early studies and news reports, only to ride the cycle into despair over yet another failure.

I am also in the earliest stages of research for my Special Report on Immunology and Autoimmunity, which you will find in this issue on page 18. As with any such report, my goal is to examine not only where we are, but to determine where the field is going next, interviewing people whose daily lives revolve around the subject, who hold out hope for the next advance.

But even as I prepare the article, I think of my many friends who struggle with some form of autoimmune condition—e.g., Crohn’s, rheumatoid arthritis, diabetes, multiple sclerosis—and I recall the pain and disability they regularly face in their lives. Even in treatment that offers relief, my friends cope with the side effects like temperature hypersensitivity, vulnerability to infection and loss of mental acuity.

We’ve talked in the past of our success in transforming some cancers from an acute condition to a chronic one, something patients can learn to live with rather than die from. And yet, I know several people with severe chronic health conditions who have at least once considered whether they wouldn’t be better off dead. Fortunately, none of my friends has acted on that impulse (that I know of).

I cannot—thankfully—imagine what it must be like to feel relief, to experience improvement in your medical condition one day, only to sense it slipping away weeks or months later when your body no longer responds to treatment, and particularly in cases where your regimen has been escalated to the highest levels of the treatment algorithm.

And ironically, as I assemble the Special Report for this issue, I have initiated research on April’s Special Report on Neuroscience, with a focus on advances in our understanding of and the diagnosis and treatment of depression syndromes, including major depressive disorder. I know I have come close to losing—and have lost—friends and family to depression.

Although I would never equate the challenges of clinical depression with the suffering of chronic disease or with the anger, frustration and sadness of failed drug development programs, the emotional, psychological and physiological turmoil that comes with each of those is, I believe, intimately linked.

Any of these states can lead to feelings of personal insufficiency—e.g., why am I not strong enough?—or solitude—e.g., no one can possibly understand—or fear—e.g., what is wrong with me? And when the stakes are so high, it can seem virtually impossible to simply slough things off and move forward.

Sometimes, though, all we have at hand is our ability to talk, to share. And in doing so, hopefully realize that we are not alone in these feelings. And perhaps, in learning of others’ experiences, we can see opportunities that we had not considered before or together, discover new approaches to get through the day, week, month, year.

To the researchers and clinicians, share your experiences and know that even failure comes with learnings that bring us closer to solutions, if excruciatingly slowly at times.

To corporations and investors, see beyond the sometimes painful financial reports and remember that there is a greater purpose to affect change in areas that touch us all.

To patients and families, please know that you have a world of support out there, striving to make your lives better. And know that you don’t have to be a passive partner, simply awaiting what you are given, but rather can be a very active participant, opening new avenues of exploration and engagement.

You are more than the medical condition.

Start or join a conversation. Share and find support. Keep talking.

Randall C Willis can be reached by email at willis@ddn-news.com